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More on hospice…

August 4, 2011

Researchers out of Brown University say there’s early evidence that hospice care for dementia patients  improves the quality of their care and the lives of their family members.

The study, published in the Journal of the American Geriatrics Society, compared the experiences of family members whose loved one with dementia didn’t receive hospice care, did receive hospice care, or received hospice care too late.

In some categories, family members with full hospice care fared much better than the other groups-

No Hospice Hospice Hospice late
Unmet need for management of pain 11.7% 7.0% 28.6%
Unmet need for management of dyspnea [shortness of breath] 19.1% 6.1% 31.3%
Family wanted more information on what to expect while patient was dying 22.5% 11.1% 48.5%
Family wanted more information regarding how pain was managed 16.9% 8.1% 31.8%
Family wanted more information on what to do at time of death 25.1% 11.8% 51.5%

But the stand out part about this data is  the gigantic jump in concerns among family members that got hospice too late. Based on this study, it seems better to receive no hospice than hospice at the wrong time.  Lead author Dr. Joan Teno of Brown’s Department of Community Health and Wellness says that makes sense.

A lot of what is going on is these are patients who end up going into an acute care hospital and sent back to a nursing home and they die with hospice services for only one or two days and I think in part family members are reacting to the situation  of a lot of transition occurring in the last 48 to 72 hours of life.

Teno says her next research will focus on how we can make it easier for people to receive hospice at the right time. She says lose of appetite is often a sign that ill patients are near the end of life. She’d like to see people die in comfort rather than go in and out of the hospital for  feeding tubes and the infections that often come with them.

But even well timed hospice didn’t always show a dramatic improvement in patient experience. In some categories, hospice and non hospice were practically equal, and in one case non hospice performed better.

No Hospice Hospice Hospice too late
Rating of quality of care, mean 31.6 34.3 25.4
Didn’t provide medical care that respected medical wishes 8.2% 8.8% 7.2%
Symptoms weren’t controlled to desired level 8.2% 8.7% 6.6%
Problems with emotional support provided to patient and family 7.4% 8.1% 5.5%
Problems with communication with family about medical condition 7.7% 8.5% 5.8%
Patient was always treated with respect 81.6% 79.9% 57.6%

Teno, who is also a Associate Medical Director for  Home and Hospice Care of Rhode Island,  says these numbers point out ways hospice care can get better.

I think like anything else we have room to improve in hospice. We need to always have a focus on improving and enhancing the quality of care and trying to innovate so we’re really meeting the needs of the dying patient and family.

Teno is applauding the decision to merge Home and Hospice with Visiting Nurse Service of Greater Rhode Island. She sees it as one more way for patients to get the end of life care they need at the right time.

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